Today’s post features a guest writer that I went to high school with. Mallory Carter’s willingness to confront challenges in the midst of a maintaining a healthy lifestyle illustrates her remarkable sense of strength. Read her story below and learn how to cope with chronic illness.
When the word “sick” comes to mind, I have a different definition than most. To some, sick is just a way we explain that we’re not feeling particularly well for a day or so. To me, sick is something entirely different. Sick is a state of being that my body has been in for the majority of my twenties.
Chronic illness, according to the CDC, affects over 45% of the American population and accounts for approximately 75% of our healthcare spending. By definition, chronic illness is any disorder that persists over a long period and affects the patient’s physical, emotional, intellectual, vocational, social, or spiritual functioning. After being diagnosed with Interstitial Cystitis, Epilepsy, and Crohn’s Disease, I’ve learned many different lessons on my journey to better health. I’ve learned patience, more medical terminology than the average person cares to know, and that no matter what anyone says… always keep a hard copy of your latest lab work on hand!
Through my struggles, I’ve found that framing things in a positive manner can make the difference between severe depression and being on the mend. Whether you are battling chronic illness, know someone who is, or simply want to understand how to help others, I’m here to share the 5 ways I’ve learned how to cope with the challenges.
Receiving a diagnosis that comes with no cure is a hard pill to swallow. A very large part of managing any disease or illness is coming to terms with the facts. While that may seem like the most obvious thing you’ll hear all day, there are plenty of people in denial who are ignoring the warning signs that their bodies are giving them. A chronic illness is something that you will deal with for the rest of your life. Take the time you need, and accept it. There are many ways that people handle this step. If you are able to sit down with your emotions and mentally sort them out… that’s great. However, it’s never a bad idea to reach out to a counselor or a therapist to help you process the information. Once you’ve accepted your diagnosis and the fact that it doesn’t have to define you, managing your care will be 1000 times easier!
Understand your illness, the symptoms, the treatments available, and the medications you are prescribed. The more educated you can become about what your options are, the more you can be in control of your treatment plan (and have some peace of mind). There are many different resource/advocacy websites, medical journals, clinical trials, and online forums that will allow you to form your own educated opinion about your health care. This is also a great time to learn the facts about your condition. Being readily available to share this information will not only help others understand your struggles, but can also help you to raise awareness in your community.
Are there foods that trigger your condition or cause it to flare? There are a million and one skewed perspective pieces out there that will tell you to eliminate gluten, carbs, fiber, animal products, or anything that isn’t organic. While there are plenty of conditions that are truly affected by diet, make sure that science backs it up. If you or your doctor suspect that food may play a role in aggravating your symptoms, take the time to identify “trigger foods.” By eating a limited diet and slowly introducing new foods, you can take the time to see how your body is affected by each item.
My one piece of advice with research? Don’t fall prey to the claims of miracle cures or all natural healing methods. You may find some natural remedies that help you, but never discontinue any medications without consulting your doctor!
Be proactive in your care
Advocate for yourself and speak up… no one else will! It is very important to find doctors that you trust. Personally, I recommend that patients who require a lot of specialty visits see an internist as opposed to a family practitioner. An internist will typically manage your overall care and refer to your specialists as needed. Most internists are also used to handling pain management for their patients as well.
Once you find your “dream team” of physicians, be very forthcoming. Don’t hold back. I don’t care how embarrassing your symptoms might seem. Doctors and nurses have heard it all. If you come prepared to list ALL of your concerns (even diarrhea, pain with sex, incontinence, excessive gas, constipation, etc.), they will be able to help you so much more than if they have to drag the information out of you.
Discuss your treatment plan, don’t be afraid to ask what your lab results mean, and make sure that all of your doctors are on the same page. If you have a condition that somehow finds a way to land you in the emergency room every now and then, make a plan. Personally, anytime I enter the hospital (whether the visit is planned or an emergency) I am admitted by my internist. That’s our game plan, he rounds on me every day, it’s what makes me comfortable, and I know that he stays in the loop. Having an emergency plan with your doctor can make you feel calm and in control during what could be a very unpredictable situation
Define your support system
Having a support system is an essential piece of coping with chronic illness. The question you need to ask yourself is, “who does that include?” For some people, reaching out for support and explaining the extent of their condition is quite uncomfortable. The beauty of the 21st century is that there are so many different avenues for support and there is something out there for everyone! For many, main supporters include family and friends. For some, that may also include co-workers. If you aren’t yet comfortable with the idea of sharing your struggles with people you already know, I hope you eventually reach that point. It’s really hard to hide things from those we love. However, there are support groups, online support forums, and even hotlines available to help field your questions and help you through difficult times.
Talking about your condition and the symptoms can feel embarrassing at first (I promise you, I used to be embarrassed to talk about my guts, and now look at me… I blog all about them)! Find someone, anyone, (in person or online) that you can confide in. It will make a world of difference to have someone at your side. As you learn to be more comfortable, you will find yourself opening up more… and I can guarantee that it will do your heart and mind some good.
Stress is a terrible thing. Stress can sideline even the healthiest of individuals. Now, imagine what it can do if you have a compromised immune system, are taking heavy duty medications, have any vitamin deficiencies, pain, or weakness. Make sure that you aren’t overloading yourself. It’s a good idea to let the people closest to you (hopefully these people are part of your support system) know what your limits are. If you’re exhausted, adjusting to new medicines, or in a flare… let them know! Know when to ask for help and don’t over-do it just to keep up appearances.
Cathy has written a great post about reducing stress, but make sure you also have ways to relieve stress. My favorite stress relievers are spin class and yoga, but there are so many other great ideas out there:
- Breathing exercises
How do you like to relieve stress? Do you have other ideas to add to the list? Maybe you also have additional advice for coping with chronic illness… either way, I’d love to hear from you!